Distressed, but inspiring from her incubator

I have only two major objections to Deanna Fei’s “Girl in Glass: How My ‘Distressed Baby’ Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles.”

The first is its cover. I am looking at you, art department of Bloomsbury. The author has spun a profound work of philosophy and sewn it into the shell of an exquisite memoir. Yet your book jacket, with its emphasis on text and a picture of Fei’s child in a porthole, is indistinguishable from a parenting guide.

Second: The book’s 100-yard subtitle. For all those words — 20 of them! —we get no hint of the refinement of Fei’s writing or the book’s overall craftsmanship. Just the opposite. It sounds like a teaser for a segment on “The View.”

Fei starts her memoir at its natural beginning, which at the time felt as unnatural as any beginning could be. On Oct. 9, 2012, at 8 a.m., Fei gave birth prematurely to a baby girl. She weighed 1 pound, 9 ounces.

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“She can’t cry or nurse or breathe,” Fei writes. “Her legs look like those of a decrepit old woman or a starving child, the skin shriveled and sagging over twigs of bone. Her skin is purplish red, bloody and bruised. One doctor, visibly shaken, describes it as ‘gelatinous.’”

At some point in this story, almost every medical professional will gaze upon Fei’s baby, coarsely stitched with tubes, and start to cry.

All love involves vulnerability. But in loving her daughter, whom she would eventually call Mila, Fei was opening herself up every day to the possibility of grief. Mila was born at 25 weeks and three days, putting her in the cruel gray zone of survivability. Fei and her husband, Peter S. Goodman, were instantly faced with a devil’s kit of terrifying choices, including shutting off the machines that were keeping their daughter alive. Within her first hours, Mila suffered a terrible brain hemorrhage, whose effects could not be foreseen.

“This is the worst thing, a voice in my head jabbers,” Fei writes.

In these early moments, Fei’s mind is filled with the crackling static of a mother in trauma. But eventually, her thoughts coalesce around a pair of powerful, and in some ways unanswerable, riddles: “Did I deliver a child or lose one?” she asks. “Do I keep holding on or do I prepare to let go?”

Throughout “Girl in Glass,” Fei explores these questions from a variety of angles, tilting the prism this way and that. Her memoir becomes a dramatic, step-by-step examination of what it means to sustain a life without knowing the consequences of doing so, of tolerating an excruciating level of ambiguity. Mila’s brain bleed alone meant a 30 percent chance of a severe intellectual disability and a 20 percent change of moderate to severe cerebral palsy. She also ran an increased risk of blindness, deafness and chronic lung disease.

“I understand that if my daughter turns out to have a serious disability, her life can still be worth living,” Fei writes. “That her inner life might possess more richness and depth that I can fathom. That there might even be something very precious gained. But I can’t pretend there is no great loss.”

Fei, a novelist, conjures this episode of her life with such immediacy and vivid emotional recall that we experience her distress as our own. As the weeks inch by, Fei grows more and more attached to her daughter, but that attachment is always mediated by terror. Every day carries the threat of disaster; some days those disasters, like a collapsed lung, actually happen. “The more I love her,” Fei writes, “the more there is to lose.”

At every turn, with each successive intervention, Mila responded. Showed her fire. There came a day when, alone in her blinking incubator, she lifted her head and neck — “a slow, forceful motion that stuns me, as if I’m watching a dragon hatchling stretch its wings for the first time.”

And now, look at her, radiant as can be, beaming from that porthole on the book jacket. You can almost hear her roar. It almost makes me forgive Bloomsbury for putting her there.